Polio, Lupus and Multiple Sclerosis are all examples of conditions that were dismissed by most physicians before definitive tests were developed. Chronic Fatigue Syndrome currently suffers from the same lack of understanding as those diseases once did.
Dr. Osias, an OB/GYN whom I had consulted for help with the hormonal aspect of my condition, told me she felt the current medical system is “excellent at treating a single organ or system in crisis”. She went on to talk about standard medical practice being bad at resolving conditions which span multiple systems and trigger crisis for the entire body. I was brought to tears when she lauded me for how far I had come on my own.
Unfortunately my experience of years of medical dismissal and misunderstanding is typical for CFS patients. I’m amazed by doctors who are unwilling or unable to go back to first principles when confronted with a case they do not immediately understand. At the same time, I have compassion for the possibility that CFS confounds the entire model of our medical system and even doctors who want to help are sometimes hamstrung by that.
Speaking of first principles, CFS is defined by Jacob Teitelbaum, MD, as: Unexplained fatigue that significantly interferes with your functioning and is associated with any two of the following symptoms:
- Brain fog (Difficulties with short-term memory, concentration, word finding, word substitution and orientation)
- Poor sleep
- Diffuse achiness
- Increased thirst
- Digestive distress
- Recurrent and/or persistent infections or flu-like feelings.
If these symptoms are accompanied by widespread tender points and trigger points in the muscles, Fibromyalgia Syndrome is present.
This definition is actually different from the CDC criteria which, as Dr. Teitelbaum shows, exclude all but five thousand to twenty thousand people in the United States. Six million Americans are believed to be afflicted (These are 2007 numbers). He uses the term CFS/FMS, as his research indicates that both conditions are different manifestations of the same underlying problem. Other names are Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomyelitis and Myalgic Encephalomyelopathy (ME).
CFS/FMS varies in degree of severity. During the worst year of my dealing with this, all of the defining symptoms were present, using either CDC criteria or Teitelbaum’s definition, and I struggled to get out of bed by 5pm. That’s the disabling kind of Chronic Fatigue. For me the worst symptom continues to be exhaustion after minimal exertion (post-exertional malaise) but its intensity has lessened – I now regularly get out of bed in the morning.
People often ask me how they can know whether their fatigue constitutes CFS. The answer is, if one has “the paradox of severe fatigue combined with insomnia (if one is exhausted, one should sleep all night), does not have severe primary depression, and these symptoms do not go away with vacation”, you likely have a CFS-related process.
Research papers published by Jacob Teitelbaum, MD, and by Kent Holtorf, MD, suggest that the underlying problem in CFS/FMS is Hypothalamic Dysfunction. The hypothalamus is the master gland in the brain that controls sleep, hormonal function, autonomic function and temperature regulation. Any subset of a long list of triggers can cause it to blow like a fuse, creating what I’ve likened to a “walking coma”. Once this happens, rest is no longer enough for the body to recover.
Nobody knows how to diagnose or treat Hypothalamic Dysfunction directly. The best approach, according to both Teitelbaum and Holtorf, is to treat all systems simultaneously. Dr. Teitelbaum calls this the SHINE protocol for Sleep, Hormone, Immune, Nutrition and Exercise. This seems to be the basis for treatment at the Fibromyalgia and Fatigue Centers and at Holtorf Medical Group. I have found that it is useful, as a patient, to be familiar with Teitelbaum’s approach, even when I’m working with a doctor who already understands CFS. This protocol has also helped me evaluate therapies that I have not seen specifically covered by existing medical research.
In this blog, I will share the treatments that I have tried and their results (good and bad). I will also tell you about the details I’ve discovered which I haven’t seen discussed anywhere. For example, after much experimentation, I’ve hit on the best diet to support my recovery as well as the best way to exercise without making myself worse. I’ve essentially conducted research on myself! Since my case has been severe, I imagine my story would be helpful for the wide range of CFS cases. Plus, Teitelbaum has found that the treatments for CFS also help general fatigue. In other words, if something helped me, it is probably worth the consideration of other Fatigue patients.
The men in “Six Blind Men and an Elephant”, got into an argument about the true nature of an elephant, having each grabbed a different part of the animal. One was confident that the elephant is “very much like a rope”, while another insisted that it was a “great mud wall baked hard in the sun”. It looks like this is the stage of current CFS/FMS understanding, but it is still possible to recover.